‘Most People with Long COVID Are Their Own Doctors’: Self-Tracking and Online Patient Groups as Pathways to Challenging Epistemic Injustice

Abstract

This article focuses on the struggles of people with Long COVID to obtain diagnoses and treatment in the face of medical dismissal and ignorance. Drawing on interviews with people with Long COVID who have engaged in self-tracking activities, it illustrates how these practices proved a valuable, if not completely successful, way to challenge medical dominance and epistemic privilege in relation to this contested illness. Furthermore, study findings demonstrate the important yet understudied role of online Long COVID patient communities in supporting self-tracking. The capacity for sharing patient-generated information through these communities offers a way for collective knowledge and interpretive resources to be amassed that can support communities of practice and mitigate hermeneutical injustice. The article contributes to scholarship on the role of digital apps, devices and communities in the generation and distribution of lay knowledge relating to Long COVID, as well as to the sociology of diagnosis and contested illnesses.